Frederick Arnold

Washington University in St. Louis

Frederick “Eric” Arnold obtained his BS at Haverford College and his PhD from Thomas Jefferson University. He then completed a postdoctoral fellowship at UC Irvine where he identified new genetic variants associated with ALS and other neurological disorders. Eric established his lab in the WashU Department of Genetics in 2025. 

Shana Dodge, PhD

The Association for Frontotemporal Degeneration

Shana Dodge, PhD, is Director of Research Engagement  at the Association for Frontotemporal Degeneration (AFTD). A licensed clinical psychologist, she holds a Ph.D. in Clinical Psychology from the University of Hawaii, an MA in Psychology from the New School, and a BA in Psychology from George Washington University. Shana works to ensure clinical researchers and regulatory bodies understand the needs, priorities, and values of people directly impacted by FTD, and that people with FTD and their loved ones can make informed decisions about research participation.  

Zach Hardy

​The Michael J. Fox Foundation for Parkinson’s Research

Zach Hardy is a member of the Public Policy team at The Michael J. Fox Foundation, where he has worked since 2022. With a decade of experience in federal, state, and local government relations, he focuses on advancing strategic state investments to support Parkinson’s research.

Esther Kane, MSN, RN-CDP

The Association for Frontotemporal Degeneration

Esther Kane, MSN, RN-CDP joined AFTD as its Director of Support and Education in November 2020. Previously, Esther served as Director of Nursing for multiple long term care facilities caring for those with dementia. She brings clinical dementia care expertise, along with a passion for quality care for those who are living with neurological conditions. In her work at AFTD she strives to ensure appropriate care and support is available to every person affected by FTD and educates healthcare professionals to improve diagnosis and care.

Tara McKean

ALS Advocate

Tara McKean is a former NJ teacher and 18-year special education advocate who collaborated with OTs, PTs, and SLPs to support the whole child. Inspired by caring for her late father, she authored Tom’s Friends of ALS Bill of Rights to ensure no family navigates the disease alone.

Ed Mytych

GeoALS

Ed Mytych is a retired IT project manager living with bulbar-onset ALS, diagnosed in 2023. He volunteers with GeoALS and other ALS research projects, and explores AI-powered communication tools (e.g., avatars, vlogging, and music creation) to stay connected and expressive.

Kyra O’Brien, MD MS

University of Pennsylvania

Kyra O’Brien is an Assistant Professor of Neurology at the University of Pennsylvania and Medical Director of the Penn GUIDE model, a comprehensive dementia care program. She specializes in the diagnosis and management of Alzheimer’s disease and related dementias, and her research examines ways to improve access to dementia care. 

Charles Poeppelman, MS, CCC-SLP

Synchron

Charles Poeppelman is a Market Development leader at Synchron, advancing implantable brain-computer interface technology. A speech-language pathologist by training, he focuses on building patient, provider, and advocacy partnerships to ensure emerging neurotechnology reflects real clinical needs and preserves autonomy for people living with paralysis.

Irene Rombel, PhD, MBA

BioCurie; Columbia University 

Dr. Irene Rombel is the CEO, President and Co-Founder of BioCurie, a TechBio company that is harnessing AI to transform the production of genomic medicines. Irene is an industry veteran with 25+ years of leadership experience in science and business, spanning academia, investing, and biopharma, including leadership roles at Spark Therapeutics and J&J.

John Russo

ALS Advocate

John has been married to his wife, Loretta, for 43 years. He lived an active and fulfilling life until his diagnosis in 2013. Since then, John has become a dedicated advocate, supporting and uplifting others in the community through awareness and service.

Lura Sawyer, MSW

ALS Advocate

Lura Sawyer founded Let Hope Grow with a vision to provide meaningful support for ALS patients and caregivers. Driven by personal connection and unwavering dedication, she has built a growing community focused on advocacy, accessible resources, and strengthening families facing the realities of ALS. 

Daniela C Zarnescu

Cell and Biological Systems, and Neurology,

Penn State College of Medicine 

Dr. Zarnescu earned her Ph.D. in Biochemistry and Molecular Biology from Penn State University in 2000 and completed postdoctoral research in human genetics at Emory University School of Medicine.

Dr. Zarnescu’s team collaborates with Dr. Simmons, Director of the Hershey ALS Clinic to study the relationship between environmental factors and ALS, and develop metabolic biomarkers. She is passionate about training the next generation of scientists and community outreach.  

Jeff Kurkjian

92.5 XTU

Jeff Kurkjian is the morning show cohost on 92.5 XTU. Jeff lost his uncle to ALS in September of 2023 after a two-and-a-half-year heroic battle. He is absolutely honored to volunteer his time to ALS United Mid-Atlantic today and any time. Kurkjian, his wife, Emily, and their daughter, McKinley, live in Skippack, Pennsylvania.